Its like herding cats…
Added on Monday 23 November 15
A group of 7 of my friends manage most of my care. Currently they provide most of my nighttime support, but they also help with things like shopping and stuff like that.
The group are affectionately known as “the herders”! The name comes from how one friend described supporting me with travel to an event. He said he didn’t take me, or lead me… he herded me ;)
One of things we learnt a while ago i that i don’t work very well as a communication hub. If a message needs to go from one herder to another sending it via me is a bad idea.
While on holiday to Centre Parks one year, we setup a Telegram chat room for everyone who was there. Telegram is a chat service, like Facebook messenger, or iMessages. Setting up a chat room means that everyone can see the messages which are posted and everyone can reply.
It worked really well for Centre Parks so we reused the idea and the Herders chat room was created.
The herders chat room is used for a wide range of things. Both around my care and support, but also around other stuff like arranging weekend plans and general chat.
We can also post photos and videos. This comes in super handy. For example, each morning i post a photo of my schedule for the day.
I can also post photos of things which confuse me and my friends can help. For example, when a curtain rail broke, I sent a photo to the group and we discussed a fix. I found a simple first at first, and then after sending me photos my friends figured out a better long term fix.
Knowing there is a place where i can ask questions provides a massive amount of reassurance for me… and for my friends.
It works via the internet and on every device i own (phone, laptop, iPad) so that means i ALWAYS have a way of calling for help. This is really important in helping to keep the anxiety at bay.
It also means that friends can more easily arrange between themselves various things. For example, who is staying which night, or what instructions we should leave the babysitter.
Finally, because conversations can be searched it leaves a record of how we made decisions and what things we planned to do.
Telegram has become an indispensable tool for managing my care and and support. Having access to rich, direct communication makes it much easier for us to co-ordinate activity and that makes everything more sustainable.
Telegram may not be the best tool (others may use Facebook etc) but having fixed chat room for those involved with care is really useful. Highly recommend it.